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NICE to reconsider evaluation of Scenesse for EPP after successful appeal


An Appeals Panel has upheld the appeal against NICE’s decision not to recommend that Scenesse (afamelanotide) be made available on the NHS.

Scenesse has been developed by Clinuvel to treat a type of porphyria known as erythropoietic protoporphyria (EPP). EPP is a rare genetic disorder, which causes extreme and debilitating pain when sufferers are exposed to sunlight. Scenesse, which works by inserting an implant under the skin, is the only treatment available that has been shown to have efficacy for the condition. However, NICE decided that it was not sufficiently cost-effective to recommend that it be made available on the NHS.

Appeals were brought against that decision by Clinuvel, the International Porphyria Patient Network (IPPN), British Porphyria Association and the British Association of Dermatologists.

The Appeal Panel upheld the appeals on three grounds.

First, it found that NICE’s failure to include the IPPN in one of its committee meetings, on the basis that the IPPN primarily represents non-UK patients, was unfair because only non-UK patients have had access to the treatment and so can inform NICE of its positive effects.

Second, it upheld the arguments of Clinuvel and the IPPN that NICE had breached the Equality Act 2010 by failing to consider whether the methodology used to evaluate Scenesse constituted discrimination against patients with EPP, which condition the Appeal Panel found “very clearly meets the definition of a disability” under the Act, contrary to the suggestion on behalf of NICE’s Highly Specialised Technologies Committee that its duties under the Act applied only in respect of those with a “patently visible disability”.

Third, the Appeal Panel upheld the IPPN and the British Association of Dermatologists’ arguments that it was unreasonable of NICE to have concluded that the clinical trial results showed that the benefits of Scenesse were “small”. In particular, the Panel found that the decision “lacks face validity” and did not “add up” because it failed to compare the increase in the ability of patients to spend time in sunlight with the normal range of time spent in sunlight for those unaffected by EPP.

The evaluation was therefore remitted to NICE to take a fresh decision as to whether Scenesse should be available on the NHS.

The decision appears here.

Sarah Love appeared for Clinuvel, instructed by Sidley Austin LLP.

Emily MacKenzie appeared for the IPPN.